My husband and I live in Rio de Janeiro, Brazil. We met in 2010, he is British and I am Brazilian. During my pregnancy, I was unable to get much done in the way of testing due to my insurance company. I wasn’t concerned, though; I was just looking forward to the birth of our son. After a labor which lasted the best part of three days and a very difficult birth, our son emerged purple and was immediately taken off to be woken up and bathed.
When the doctor brought him back, the first thing she said to us, very matter of factly… coldly even, was that our baby, Erwin, had Down Syndrome.
There then followed a debate between the doctors, which lasted some weeks, about whether our boy really in fact had Down’s Syndrome. A genetic test was taken to settle the matter. This was a time of intense doubt and worry for me; I nearly went crazy. My husband, on the other hand, was far more certain that Erwin had Down’s Syndrome. After three months(you read that right) the result came back positive.
We didn’t take any chances, and we put Erwin into treatment as soon as practically possible. When our pediatrician, Dr Mario, heard about this debacle, he could barely conceal his fury. He said that it was obvious, and that in any case such a diagnosis should be made by sight.
In his first months, Erwin saw various specialists, including an endocrinologist, a geneticist–who was quite useless–a cardiologist, and a neuron-paediatrician, and undertook diverse tests and examinations to determine which of the conditions that normally accompany Down’s Syndrome he suffered from. Fortunately, except for hypothyroidism, for which he was prescribed a daily tablet, he was in good health.
Dr Mario recommended that we begin therapy immediately and wrote a letter requesting that Erwin be placed for treatment in one of the city’s public clinics. I spent that afternoon and evening researching and the next day calling and emailing different clinics in Rio de Janeiro. A week later, after an appointment at the hospital, I went to the therapy department there.
At first, the secretary tried to fob me off by saying that there were no places available, but eventually she let me through to speak to the therapists, whoI needed to see. One of them, Patricia, saw my distress, came over, asked me if I had time, and proceeded to examine Erwin there and then. There really were no places available at the Hospital’s clinic, but she recommended a private therapy centre at which she worked in Copacabana.
We went there the following Monday. Alexandra, a physiotherapist, welcomed us and examined Erwin. She was warm, kind and obviously highly competent. We knew straight away that we wanted her to treat our son. The difference between public and private healthcare in Brazil is like night and day, but even so, this clinic, today called Espaço Habilitar, was incredible. It was also expensive, but worth every penny. It was agreed that Erwin would have physiotherapy with Alexandra, occupational therapy with Patricia, and speech therapy with Luciana. During the months that followed, we struck up an excellent relationship with all three, which we have maintained to this day.
At one of our checkups, Doctor Mario noticed that one of Erwin’s testicles was missing. A scan was ordered and a hernia was discovered. Over the next few months, the testicle stubbornly refused to descend, and so an operation was necessary. We scheduled it for the end of July (booking an operation in Brazil is quite an adventure; but that’s another story). In the meantime, Erwin suffered what we thought to be an allergic reaction to a latex glove while playing. We took him immediately to the local doctor, but he recovered within minutes. We were sure, though, to keep anything latex away from him. We also informed the hospital.
The day of the operation came. My husband went in with our son to prepare him for the operation. He happened to mention the latex incident, and it was a good thing he did, for the medics there seemed to know nothing about it, despite all the details having been written in my son’s medical records, which were there in front of the doctor. The operation had to be rearranged and an allergy test sought. We were not best pleased, to put it mildly.
The allergy test, which was done in two parts, came back negative. Erwin finally had his operation at the beginning of November. Luckily it all passed off well without any problems; indeed the surgeon did an excellent job. Despite doctor’s orders that Erwin should rest and be still for at least a week, within a couple of days he was tearing about the place.
Now, Erwin is 18 months old. He is healthy and happy and full of mischief; he is a joy to everyone he meets and his smile has won many hearts. He has just begun crèche and has made many friends. He is on the verge of walking. Erwin is a source of endless happiness to us, and we look forward to all the years to come with him at our side.
Anna Christina lives with her husbandTimand 18-month-old son, Erwin, in Rio de Janeiro. Anna studied to be a nursery and primary school teacher at a technical college but later switched to teaching teenagers. She works as an art teacher at both public and private schools in the city. You can follow the beautiful photos posted of Erwin and his family by following @chrisvictor_br on instagram.
*NOTE*
DS used to be considered a seriously life-limiting disability in Brazil; it was even rare to see people with DS out on the streets. Over the last several years, the thinking has changed and there is much more integration in diverse contexts, especially in education. Probably the first time that DS was properly treated in the media was in the popular soap opera Páginas da Vida (Pages of Life), in which a mother gives birth to twins, one of whom, the girl, has DS. The mother dies during the birth. The grandmother claims that the child died, too, but in fact gives her up for adoption, and she is taken in by the doctor who delivered her. The soap opera tells the story of girl’s life and the challenges she faces. There are some actors, teachers with DS in Brazil and even a reporter. Sometimes one can read a story in the media that paints DS in a positive light. Next week a new film, Cromossomo 21, will be released.
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